Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) can cause a wide range of severity and functional impairment, leaving some patients able to work while others are homebound or bedbound. The most severely ill patients may need total care. Yet, patients with severe or very severe ME/CFS str...
| Main Authors: | , , , , |
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| Format: | Article |
| Language: | English |
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MDPI AG
2021-10-01
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| Series: | Healthcare |
| Subjects: | |
| Online Access: | https://www.mdpi.com/2227-9032/9/10/1331 |
| _version_ | 1797514421956771840 |
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| author | Jose G. Montoya Theresa G. Dowell Amy E. Mooney Mary E. Dimmock Lily Chu |
| author_facet | Jose G. Montoya Theresa G. Dowell Amy E. Mooney Mary E. Dimmock Lily Chu |
| author_sort | Jose G. Montoya |
| collection | DOAJ |
| description | Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) can cause a wide range of severity and functional impairment, leaving some patients able to work while others are homebound or bedbound. The most severely ill patients may need total care. Yet, patients with severe or very severe ME/CFS struggle to receive appropriate medical care because they cannot travel to doctors’ offices and their doctors lack accurate information about the nature of this disease and how to diagnose and manage it. Recently published clinical guidance provides updated information about ME/CFS but advice on caring for the severely ill is limited. This article is intended to fill that gap. Based on published clinical guidance and clinical experience, we describe the clinical presentation of severe ME/CFS and provide patient-centered recommendations on diagnosis, assessment and approaches to treatment and management. We also provide suggestions to support the busy provider in caring for these patients by leveraging partnerships with the patient, their caregivers, and other providers and by using technology such as telemedicine. Combined with compassion, humility, and respect for the patient’s experience, such approaches can enable the primary care provider and other healthcare professionals to provide the care these patients require and deserve. |
| first_indexed | 2024-03-10T06:31:23Z |
| format | Article |
| id | doaj.art-08f057b35579406d8c4890de13484a51 |
| institution | Directory Open Access Journal |
| issn | 2227-9032 |
| language | English |
| last_indexed | 2024-03-10T06:31:23Z |
| publishDate | 2021-10-01 |
| publisher | MDPI AG |
| record_format | Article |
| series | Healthcare |
| spelling | doaj.art-08f057b35579406d8c4890de13484a512023-11-22T18:25:22ZengMDPI AGHealthcare2227-90322021-10-01910133110.3390/healthcare9101331Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue SyndromeJose G. Montoya0Theresa G. Dowell1Amy E. Mooney2Mary E. Dimmock3Lily Chu4Dr. Jack S. Remington Laboratory for Specialty Diagnostics, Palo Alto Medical Foundation, Palo Alto, CA 94301, USAFour Peaks Healthcare Associates, Flagstaff, AZ 86004, USAIndependent Consultant, Riverside, IL 60546, USAIndependent Consultant, Waterford, CT 06385, USAIndependent Consultant, Burlingame, CA 94010, USAMyalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) can cause a wide range of severity and functional impairment, leaving some patients able to work while others are homebound or bedbound. The most severely ill patients may need total care. Yet, patients with severe or very severe ME/CFS struggle to receive appropriate medical care because they cannot travel to doctors’ offices and their doctors lack accurate information about the nature of this disease and how to diagnose and manage it. Recently published clinical guidance provides updated information about ME/CFS but advice on caring for the severely ill is limited. This article is intended to fill that gap. Based on published clinical guidance and clinical experience, we describe the clinical presentation of severe ME/CFS and provide patient-centered recommendations on diagnosis, assessment and approaches to treatment and management. We also provide suggestions to support the busy provider in caring for these patients by leveraging partnerships with the patient, their caregivers, and other providers and by using technology such as telemedicine. Combined with compassion, humility, and respect for the patient’s experience, such approaches can enable the primary care provider and other healthcare professionals to provide the care these patients require and deserve.https://www.mdpi.com/2227-9032/9/10/1331myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)chronic fatigue syndrome (CFS)myalgic encephalomyelitis (ME)severely affected (housebound) patientsvery severely affected (bedbound) patientschronic disease |
| spellingShingle | Jose G. Montoya Theresa G. Dowell Amy E. Mooney Mary E. Dimmock Lily Chu Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Healthcare myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) chronic fatigue syndrome (CFS) myalgic encephalomyelitis (ME) severely affected (housebound) patients very severely affected (bedbound) patients chronic disease |
| title | Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome |
| title_full | Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome |
| title_fullStr | Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome |
| title_full_unstemmed | Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome |
| title_short | Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome |
| title_sort | caring for the patient with severe or very severe myalgic encephalomyelitis chronic fatigue syndrome |
| topic | myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) chronic fatigue syndrome (CFS) myalgic encephalomyelitis (ME) severely affected (housebound) patients very severely affected (bedbound) patients chronic disease |
| url | https://www.mdpi.com/2227-9032/9/10/1331 |
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